The tragedy of CTE: a brain disease that afflicts athletes

Mysteries of the Mind: chronic traumatic encephalopathy

May 12, 2013 12:00 PM

Julia Rendleman/Post-Gazette

Shane Shelley, center, at a crawfish boil near Belle Chasse, La., played quarterback on the high school team Chris Henry starred on. Before a play, he says, "me and Chris could just look at each other and I knew what he was going to do on the route because we had been playing together since we were 7 or 8 years old."

Michael Henninger/Post-Gazette

Fred McNeill, who has been diagnosed with CTE, reacts with surprise after his caretaker, Renee Sayyed, enters his home in the Miracle Mile neighborhood of Los Angeles without him knowing. Ms. Sayyed is one of two caretakers who help Fred with cooking, transportation and other daily activities. His adult son Gavin also lives with him.

Michael Henninger/Post-Gazette

While at an adult day care center, Fred McNeill raises his arms in a circular motion and chants during a yoga for the brain class.

Michael Henninger/Post-Gazette

Fred McNeill and Renee Sayyed ride a bus to an appointment at OPICA, an adult day care center that provides Brain Train sessions that seek to stimulate the minds of patients with dementia.

Michael Henninger/Post-Gazette

Fred McNeill power walks ahead of his caregiver en route to the grocery store. Fred frequently power walks as his main form of exercise.

Fred McNeill (No. 54) stands with the rest of the Minnesota Vikings in a 1982 team photo.

Michael Henninger/Post-Gazette

Tia McNeill married Fred in 1983. Although they are separated, she sees him frequently and takes care of his finances.

Julia Rendleman/Post-Gazette

Carolyn Henry Glaspy sits at her home in Cincinnati with her surviving sons, Marcus, 26, left, and Dereck, 23, right. Her son, Chris, who played for the Cincinnati Bengals and died in 2009, was arrested several times for off-the-field behavior, and his doctors think CTE may have been behind his behavioral problems.

Julia Rendleman/Post-Gazette

Chris Henry's headstone in Belle Chasse, La., where he grew up. His 2009 funeral drew hundreds of mourners, including players from many NFL teams.

By Mark Roth / Pittsburgh Post-Gazette

Chris Henry was a fleet wide receiver for the Cincinnati Bengals. During his five seasons with the team, he developed a reputation as a talented athlete on the field but a bad boy off it, even though those who knew him well say he was typically quiet and respectful.

On Dec. 16, 2009, Chris got into an argument with his fiancee, Loleini Tonga, in Charlotte, N.C. He jumped onto the open bed of a pickup truck she was driving, and a few minutes later, he either fell or jumped from the truck, landing on his head and suffering fatal brain injuries.

Fred McNeill played 12 seasons for the Minnesota Vikings in the '70s and '80s. After retiring, he finished law school and became a successful attorney in Minneapolis, helping to win major class-action lawsuits.

Former NFL player talks about impact of CTE on his life

Fred McNeill, a former Minnesota Vikings player, suffers from CTE. Here, he, his caregiver and his wife, with whom he is separated, discuss the disease and its impact on his life. (Video and photographs by Michael Henninger; 5/12/2013)

Steelers great Mike Webster, others fell victim to CTE

CTE, or chronic traumatic encephalopathy, is a brain disorder caused by repeated head trauma. It was first diagnosed in Steeler great Mike Webster but is affecting young players. (Video by Julia Rendleman; 5/12/2013)

Today, Fred is a handsome, fit 61-year-old living in Los Angeles, but because of advancing dementia, he has lost his law license and his driver's license, and he needs live-in caretakers and the help of his family to manage everything from doctors' appointments to his finances.

What binds the two men together is a condition known as chronic traumatic encephalopathy, or CTE, a progressive degenerative disease that occurs when a protein known as tau becomes damaged and begins to fill up the brain.

Their stories symbolize both the tragedy and the quandary of this still mysterious condition, which some researchers have linked to the thousands of head collisions the men received while playing one of America's most popular and lucrative sports.

By the time a typical football player leaves college, said University of Chicago neurosurgeon Julian Bailes, he will have experienced 8,000 blows to the head, with more to come in the pros. Dr. Bailes, who was previously based at West Virginia University and knows both the Henry and McNeill families, said he is convinced there is a connection between repeated head impacts -- even if they weren't concussions -- and eventually developing CTE.

"I wonder if it's not going to be an exposure problem like sunburn or radiation or smoking. I'm sure it's much more complicated than that, and that there is a strong genetic component" in who will get CTE, "but it probably depends on how many head hits you had and how they occurred."

Other brain experts, particularly those advising the National Football League, say the connection between head trauma and CTE is far from certain.

"I don't think there's any question that CTE exists," said Robert Harbaugh, chairman of neurosurgery at Penn State University and a member of the NFL's Head, Neck and Spine Committee. "I think what has concerned me is that there has been a firestorm of interest and concern that this is becoming an epidemic. There is no doubt that some former players are developing dementing illnesses, but we don't know all the steps that lead to that."

Finding the cause of CTE is likely to be a key factor in a pending lawsuit filed by former football players against the NFL, which argues that the league failed to warn players in the past about the dangers of concussions and head trauma.

Those diagnosed with CTE include some of the most dramatic, tragic cases in that lawsuit, including former linebacker Junior Seau and former defensive backs David Duerson and Ray Easterling, all of whom committed suicide after years of declining cognitive ability and emotional turmoil.

What's going on?

The stories of Chris Henry and Fred McNeill show just how challenging it is to get a clear picture of CTE.

Fred played a dozen years in the bone-crunching position of linebacker with the Vikings. Even three decades later, he has lingering physical injuries: He can't straighten one arm all the way. A wrist he broke still aches periodically. He has recurring pain in his knees and ankles.

About this series

Over the course of this year, the Pittsburgh Post-Gazette is looking deeply at five brain disorders that affect millions of people: schizophrenia, athletes' brain injuries, autism, depression and phobias. In this second segment of the series, we examine a disorder that causes mood changes, dementia and may even trigger suicides in some former athletes and soldiers -- chronic traumatic encephalopathy, or CTE. It is the latest of our "Mysteries of the Mind."

Coming Monday: Scientists hunt for ways to treat the damage caused by CTE.

But the condition that has changed his life is the deterioration of his brain. Like most other football players who have been diagnosed with CTE -- including the first case ever discovered, former Steelers center Mike Webster -- his mental confusion took years to develop and began to set in when he was in his 40s.

Chris Henry, on the other hand, played only parts of five seasons in the NFL, from 2005-09, after competing two years at West Virginia University. If anything, he was known for avoiding heavy collisions on the field.

Jason Colson, a running back at West Virginia who played with Chris, said he usually ran long, downfield routes and often stepped out of bounds after receptions.

"It was very shocking that he had [CTE]," he said. "You talk about guys like Junior Seau, they played positions that had a lot of collisions. I would think I'd be more susceptible to injury than Chris."

After Chris was drafted by the Bengals, he was arrested seven times for off-the-field incidents in his first four seasons with the team, and at one point, the Bengals cut him from the squad entirely before inviting him back for the 2009-10 season.

The incidents were mostly petty -- marijuana possession, drunken driving, serving alcohol to a minor, illegal gun possession, fights. "He only had one day in jail out of all the things he was accused of," said his mother, Carolyn Henry Glaspy.

But the string of arrests gave Chris a poor reputation, which was why his last agent, Dave Lee, was shocked when he first met the man behind the troublemaker image.

"The best way to describe him?" Mr. Lee said. "In the first five minutes, he was the exact opposite of what the media had portrayed him to be" -- he was quiet, almost timid, and spent most of their conversation asking questions about the agent's life instead of talking about himself.

CTE did not kill Chris directly. The impact when his head struck the roadway in Charlotte caused his brain to swell fatally. It was only weeks later, after California pathologist Bennet Omalu looked at microscopic slices of his brain, that doctors identified the brain disorder.

Did CTE account for Chris Henry's erratic behavior?

"I think it's impossible to know if his behavior was just Chris, or whether it was a manifestation of the brain disorder," said Dr. Bailes, who knew Chris as a WVU player. "It was always my impression that Chris was somewhat introverted and not a particularly bad person.

"But he had pretty extensive CTE changes in his brain and he had a lot of them, to be as young as he was. It did seem as he got into the professional ranks that he deteriorated, and the cause of his death was along the same lines, a kind of ridiculous impulsive behavior."

Adding to the mystery of CTE is the fact that the test used to diagnose the condition in Fred is somewhat controversial itself.

Most doctors say CTE can't be detected while people are still alive, but psychiatrist Gary Small and colleagues at the University of California at Los Angeles used a radioactively tagged tracer to identify CTE deposits in the brains of five former NFL players.

Pathologists who have found CTE in deceased players' brains say it is characterized by the tau protein, but usually there is very little or no beta amyloid, a separate brain protein that co-exists with tau in Alzheimer's disease.

The UCLA tracer was developed to detect Alzheimer's, and it attaches to both beta amyloid and tau deposits in the brain, so some might question whether Fred and other players who had stronger signals of the tracer than a control group are simply suffering from early-onset Alzheimer's.

In an interview at UCLA, though, Dr. Small said "the weakness of that argument is the pattern we've seen in the players is similar to but different from Alzheimer's disease" in where the deposits are located in the brain.

Ambitious and articulate

Inspired by teammate Alan Page, who went on to become a Minnesota Supreme Court justice, Fred McNeill began studying the law even before he retired from the NFL in 1985.

He graduated from the William Mitchell College of Law in St. Paul, Minn., in 1987, scoring near the top of his class, and immediately was recruited by major law firms in the region, said his wife, Tia.

Within a few years, he became a partner at the Minneapolis firm of Zimmerman Reed and became known as a leading plaintiffs' attorney in major class-action lawsuits.

After a few years, though, his legal career began to spin out of control.

Unbeknownst to his wife, he was missing appointments and failing to show up for court appearances.

Looking back on it all, Ms. McNeill believes she was in denial, right up through the moment when they were on a family vacation with their two young sons and they received a letter informing them that Fred had been relieved of his law firm partnership.

"There were times where I had the store, and he was in his office, and I would say 'Fred, I've got to work tonight, the baby sitter's had to go, so I took the kids to a fun center and you've got to pick up the kids,' and if he did it once, he did it 10 times: He'd forget to pick up the kids."

At the start of their relationship, she said, she had always been the excitable one, and Fred had been calm and collected, but all of a sudden, he began to lose his temper over small things.

"I would go to feed the kids something, and I'd serve the boys and he'd take their chicken, and I'd say, 'Fred, why did you take little Fred's chicken?' and he lost it one night. He never was physical. But he would get in my face as if he might do something, but it was more like shouting."

In 1998, Ms. McNeill moved back to Los Angeles to take care of her mother. Fred stayed behind in Minnesota, saying he had legal cases he needed to wrap up.

When he finally joined her, he could get only lower-level attorney's work but was frequently let go. At one point, he worked for his brother's law firm in Los Angeles, and even his brother had to dismiss him.

As their problems grew and finances tightened, Ms. McNeill felt she had to separate from him, and she moved in with her mother. Fred was even homeless for a time after that, sometimes sleeping in his office or car.

While she recognized that Fred was in serious decline, she thought he had clinical depression. She didn't suspect he had a brain disease until she went on the Internet and found Dr. Omalu's name.

Bennet Omalu, who grew up in Nigeria, was the first pathologist in America to identify CTE in the brains of former NFL players, beginning with Steelers Mike Webster, Terry Long and Justin Strzelczyk -- autopsies that he did while working for former Allegheny County Coroner Cyril Wecht.

Ms. McNeill called him up, "and I explained what I'd been living with, and he said, 'Tia, this is what's going on.' He said this is a classic" case of CTE.

Eventually, she was able to get Social Security disability and NFL subsidies for Fred, who now lives in his own home with his younger son Gavin and two caretakers.

Ms. McNeill is still separated from Fred, but she sees him frequently and takes care of his finances.

"I'm a glass-half-full kind of person," she said recently. "Sure, I have my half-empty days. Did I think it would turn out this way? Is this the hand I thought I would be dealt? No. Fred sometimes says, 'Are we ever going to get back together?' and I'm like, 'No.'

"But we're good friends, and I will always continue to do whatever I can -- he's my children's father -- and I love him in that he's a great person."

A mother's bafflement

Carolyn Henry Glaspy lives on the west side of Cincinnati in a neat but modest home with her husband, Willie Glaspy, son Marcus and stepson Michael.

Whatever her son Chris earned in his years in the NFL, it didn't trickle down to her. His agent, Dave Lee, said Chris spent most of the money he made, and in his last season with the Bengals, the team had hired someone to help him pay off his overdue bills.

In fact, Mr. Lee said, it was finances that led to the fatal argument Chris had with his fiancee.

The night before Chris died, Mr. Lee said Chris called him to say that he and Ms. Tonga had argued because he had gotten worried about whether they could afford the wedding they had planned, and he had asked if she would exchange her ring for a cheaper one.

Mr. Lee told Chris he was in the midst of negotiating a contract extension for him. "I said, 'Chris, next time when you see her, try to tell her you're going to be OK' " on the wedding costs.

Chris had relocated to Charlotte to be with Ms. Tonga and their two young sons while he recuperated from a broken arm he suffered while playing against the Baltimore Ravens.

The morning after Chris called his agent, Lee Hardy was trimming his trees in chilly weather on his property, next to the home Ms. Tonga and Chris were living in.

He heard a truck come down a gravel road that paralleled his driveway and then stop suddenly, spraying stones. "I noticed there was a guy on the back of the truck, with his arm in a cast and no shoes and no shirt on, which was kind of bizarre because it was cold."

The man was Chris, and Ms. Tonga was the driver. He noticed Chris banging on the cab of the truck. "I did not see anger. It was a humble type thing. He was saying simple things, like 'We need to talk.' "

But Ms. Tonga started the truck again and drove down to the intersection with nearby Peachtree Road. That's when Mr. Hardy heard Chris say, "If you pull out on the road, I will jump out and kill myself." She gunned the truck onto Peachtree, and they disappeared.

Police later determined Ms. Tonga was probably driving about 20 mph on a winding side street when Chris either toppled or jumped from the truck.

Back in Cincinnati, Mrs. Glaspy got a call from Bengals head coach Marvin Lewis asking if she had spoken to Chris that day. "I said 'Not yet,' " she recalled, "and he said 'We've been calling his phone,' because Chris was supposed to check in each day."

Shortly after that, a Bengals security officer said police would be arriving at her home to tell her something. "I said to my husband, 'Oh my God, what kind of trouble is Chris in? Did he kill someone? Did he get in an accident? Did he get in a fight with someone? Is he running from the law? Somebody tell me something.' "

Hours later, still not knowing what had happened to her son, she walked into a Charlotte hospital ward.

"The doctor pulled the curtain, and I was looking at my baby. It was Chris and his eyes were open, so I thought he was looking at me, and so I said, 'Come on baby, talk to mama, talk to me.' And he didn't move. Then the doctor said, 'We did everything we could,' and I said 'What are you talking about?' and he was starting to explain to me that his brain had started swelling and they couldn't do nothing for it and he said when he hit his head, he was dead right then, so they considered him brain dead."

About an hour later, a hospital staff member asked her if she would consider donating Chris' organs. "I put my head on Chris' chest and his heart was beating, but I knew the rest of him wasn't there, so I told them yes."

Eight people, many of whom Mrs. Glaspy has since met, received organs or tissue from Chris -- pancreas, kidneys, lungs, heart, liver, corneas and tissue.

Ms. Tonga has never been willing to talk to her about what happened that day, and Mrs. Glaspy doesn't press the issue. "I love my grandchildren, so I have to accept the mother no matter what happens, because I don't want none of them to leave out of my life."

Searching for words

Fred McNeill was affable and gracious when he sat down for an interview, although it was clear that he wasn't quite sure who was talking to him. "You're here to help stimulate my brain, right?"

When he was asked about his brain problems, he paused to gather himself and then said:

"It's pretty obvious I was having a problem with memory issues. I wasn't feeling good about practicing law when I started feeling the impact of the injuries I received when I played football."

But then he quickly added, "I feel right now like my memory has come home." Does that mean he feels his memory is back to full strength? "Oh, yeah," he said.

His friends and relatives tell a different story.

Matt Blair, who played linebacker with Fred for the Vikings, visited his old friend several months ago. "Fred picked me up at the airport, and he was driving his car and so we had to get some gas, and Fred didn't have any money. So I said, 'Don't worry about it, I'll pay for the gas.' But then when he was driving his car, it was a little different than normal and actually kind of disturbing, so when we got done, I said, 'Fred, if we have to go anyplace else, I'm driving.' "

Later in the stay, he and Fred were taking a walk around Fred's neighborhood, "and I said, 'Fred, we need to get back to your house,' and he didn't quite know how to do that."

Fred's older brother Rod, who lives about a 45-minute drive east of Los Angeles, also played professional football.

"Each of us kind of had our own roles in the family," Rod said, "and Fred was the one who in the past would take conversations deeper, because he was more analytical. We've kind of lost that aspect of Fred, because he is just not able to do the same kind of analytical stuff he could do."

He said he'd like to take care of Fred in his home after he retires.

"It's funny how sometimes, Fred is still there. It's like pretty much a full painting, but sometimes some of the colors are missing and the artist never got to that part.

"It's scary, too, because one day he'll look at me and say 'Who are you?' He can't remember things we did together as kids."

While Fred clings to the hope that he can get better, he also said hesitantly, "There was a time when I was kind of upset about the fact that I was dealing with these things. There was actually a time when I was, when I was, I was going to kill myself. I had a knife. And I was thinking about cutting my wrists."

What stopped him? "Family," he said simply.

Tia McNeill credits Daniel Amen, a well-known psychiatrist, with diagnosing Fred's dementia and helping him get disability payments, all the while providing free treatment, which in turn led to support payments for Fred from the NFL.

Nevertheless, she has joined the lawsuits against the league.

"I'm not angry at the league," she said. "I just want -- it's like tobacco; on the side of the helmet, put 'playing football may be dangerous to your health' -- I mean, 90 percent of the guys will probably still play but at least they'd be making an informed decision."

A slow realization

After Chris Henry's death and the organ donations and the lavish funeral, Mrs. Glaspy was approached by Dr. Bailes and Dr. Omalu to allow them to examine Chris' brain.

Weeks later, they invited her to Pittsburgh so they could talk about their findings over dinner.

"They told me he had the same disease they had found in other players who were deceased. And then one doctor was showing me the paperwork that half the problems he was having off the field were problems he was having with the brain disease. After I went to sleep and woke up, I thought to myself, 'That was why he couldn't focus and was getting into trouble.' "

She knows that her son's arrests will remain a part of his legacy.

"But I'd like people to remember him for all the good he did, and his talent, and how he's somebody's hero because people are alive because of the organs he donated."